Below there are answers and current info. regarding ME/CFS - LONG-Covid (it’s Google translation Russian-English):
For over 10 years (since 2002) Igor and Artem Markov have been answering patients' questions on infectious diseases on the Ukrainian portal "Likar-Info". With pleasure we answer for the patients of your Forum.PhoenixRising. Since the questions are general and strategic in nature, there were no short answers:
1) Please tell us which of the established criteria for diagnosing ME/CFS you used to determine that 4500 of your patients had ME/CFS? The established criteria are the Canadian Consensus Criteria, the International Consensus Criteria and the Institutes of Medicine ME/CFS/SEID diagnosis flowchart. Knowing which of these criteria used will help us evaluate your results.
For the first time, the term and definition of CFS were presented by American scientists in 1988. In 1994, the CFS definition was revised and, in its updated form, it received international status, which we used in our diagnostic assessments. According to the 1994 definition, a minimum of 6 months of incomprehensible fatigue is needed, which does not disappear, but does not relieve after rest and significantly limits the level of daily activity.
In addition to fatigue that lasts at least 6 months, four or more of the 8 of these symptoms must be present: • impaired memory or concentration; • pharyngitis; • painful cervical or axillary lymph nodes on palpation; • muscle soreness or stiffness; • joint pain (no redness or swelling); • recurrent headache or a change in its quality (type, severity); • sleep that does not bring a feeling of recovery (freshness, vigor); • increased fatigue to exhaustion after physical or mental exertion, which lasts more than 24 hours.
Among 2340/4500 (52%) adult patients with Chronic Bacterial Intoxication Syndrom (CBIS), at least 4 main symptoms in various combinations were found in all 100% of cases, 5 - in 2153/2340 (92%), 6 - in 1849/2340 (79%), 7 - in 1732/2340 (74%) and all 8 - in 1240/2340 or 53% (see Message 2 in the materials of the 8th Congress on Infectious Diseases 14-15.02.2021).
This could most likely indicate that, under normal conditions, all these patients should have been diagnosed with a previously known CFS/ME diagnosis with an uncertain etiology of origin. In children, in the overwhelming majority of cases, the diagnosis of Nephrodysbacteriosis/CBIS was first established in the clinic, had age-related clinical features and did not always meet the accepted criteria for CFS/ME for adults (see Report 6 published by the 8th Congress on Infectious Diseases, February 15-16, 2021).
2) What is your definition of full convalescence and recovery and what time-line did you use to ensure that this was not a simple remission? Is continued treatment necessary to ensure long-term health?
When treating with bacterial autovaccines, regardless of the localization of the focus of chronic bacterial infection (in the nasopharynx, in the mouth, in the eyes, in the bronchi and / or in the lungs, in the genitourinary system, including in the kidneys - Nephrodysbacteriosis/CBIS or pyelonephritis) complete recovery was determined by 3 main criteria, understandable and accessible to both the patient and his attending physician: - clinical: the absence of complaints and objective symptoms of the disease, which were determined before the start of treatment; - microscopic: normalization of the general analysis of urine (in cases of its initial deviation from the norm) and - bacteriological: the absence of pathogenic and opportunistic flora in warm urine cultures (or from other concomitant foci, for example, in the nasopharynx with chronic staphylococcal infection, which is the main source of subsequent kidney infection).
With a disease duration of 3-5 years, the absence of these 3 criteria for 1 year was considered as clinical recovery. With longer periods of CFS / ME disease (up to 10 years or more), they were careful and more often considered the absence of complaints as a stable long-term remission, sometimes throughout the foreseeable future life.
Although it should be noted that sometimes patients who completely recovered 5-7 years ago from Nephrodysbacteriosis/CBIS returned to the clinic due to the relapse of certain symptoms of the disease. But these symptoms were always much less pronounced compared to the initial episode. In addition, the patients suffered to a lesser extent, p.h. already knew their true origin and turned, without wasting time on trips to other specialists, a few weeks / months after their resumption.
In connection with this question, two remarks from the authors are needed.
First, since infection with bacteria that cause Nephrodysbacteriosis/CBIS occurs daily and repeatedly, lifelong resistance to them cannot be formed. Thus, post-vaccination immunity in this case necessarily requires additional immunization, as for example, with diphtheria (every 10 years), with influenza or COVID-19 (every 9-12 months).
Such vaccination for Nephrodysbacteriosis/CBIS can be both therapeutic (with the resumption of symptoms that do not go away on their own in 2-3 weeks), and prophylactic - with positive results of bacteriological examination of warm urine against the background of clinical well-being.
Secondly, there are many cofactor causes that lead to a weakening of local immunity on the mucous membranes and can provoke an exacerbation of Nephrodysbacteriosis/CBIS. Taking antibiotics is one of these main provoking reasons.
3) What are your charges for: initial consult; diagnosis; full course of treatment; follow-up? (Detailed answer, please)
The cost is more than humane. Consultation - $ 100, examination - $ 200-500 (depending on the volume of research), 1 vaccination course of 10 injections - $ 100, 1 vaccination cycle consists of 2-3 courses, no more than 1 time in 6 months. A complete treatment protocol can be 4-6 cycles over 2-3 years. Now more about the cost of examination and treatment. Money and earnings for the clinic are good, but in this case, not the main thing.
It is wrong and offensive that patients who are ready and able to spend any money on their treatment, for years and decades go in circles from specialist to specialist, each of whom treats only "their" symptoms and diagnoses within the framework of their specialization. And the main reason (Nephrodysbacteriosis/CBIS which imitate CFS/ME) remains behind the scenes.
4) Do patients need to come to your clinic or can you work with tele-consultations and couriered biological samples? If patients need to stay for a length of time close to your clinic, what accommodations are available and what is their approximate cost?
For patients with limited mobility, it is possible to work remotely with the delivery of samples of isolated bacterial cultures. To do this, you still need a virtual consultation with the preliminary provision of copies of extracts from the medical history and the tests performed.
For mobile patients, it is better to come to the first "live" consultation in Kyev, Ukraine, and then you can also consult in absentia. The examination time takes 1-2 hours, the time for delivery of 3 bacterial cultures of warm urine - up to 3 days. Performing bacterial tests - 7 days, preparation of autovaccines - 7-8 days. Depending on plans and possibilities, the minimum stay in Kyev ranges from 3 to 15-16 days.
The vaccine is administered on an outpatient basis subcutaneously at the place of residence. There are no side effects (the autovaccine does not contain preservatives, more than 25 thousand injections). Next to our clinic (300 meters) there is a modern hotel "Tourist". The cost of the room is from 1420 UAH / day (2-bed economy class room 18 sq.m.) to 4420 UAH / day for a suite; hryvnia exchange rate on 06/10/21 - 27.2 UAH / $ 1, i.e. from $ 52 to $ 162 per day.
5) What is the average length of time between initial consultation and potential convalescence or end of treatment?
The time period from the start of treatment to its end (recovery) can range from 6 months (1 treatment cycle, consisting of 3 courses of immunization with different autovaccines for 100-110 days) to 3 years (4-6 treatment cycles with intervals between cycles of 3-4 months), depending on the duration of the disease. On average, when the disease is 3-7 years old, 3-4 treatment cycles are required.
But! The first positive changes begin during the first course of vaccination (the first 7-10 injections). The effectiveness of treatment and the duration of a positive clinical response resemble a kind of "swing": better-worse-better. In the rhythm of the waltz, three quarters: one-two-three, one-two-three. But even with an exacerbation, the condition never returns to the zero point from which treatment began.
6) Could you please give us links to independent studies or data that support the efficacy of your protocol in treating patients diagnosed through one of the criteria listed above? Peer review is very important to patients.
No, they could not. They simply do not exist. For 12 years we continued this research, until we ourselves were convinced that this was not an invention, not an accident, not a coincidence, not a personal passion of the authors.
Today, multicenter studies are needed (fortunately, there are many regional and international centers for the study of CFS/ME with quite decent funding) to confirm the existence of Nephrodysbacteriosis/CBIS and related conditions. Actually, this was the main meaning of our messages: today we are absolutely sure that the life and fate, in the literal sense of the word, of millions of CFS/ME patients around the world can be radically changed for the better.
P.S.
The best confirmation of new information is new cases of the disease. Today, in our Clinic, among other patients, 2 patients with Nephrodysbacteriosis/CBIS are undergoing examination and treatment. These are the stories/
examples:
1) A 70-year-old man, went to the clinic on 06/03/2021. From 03/20/2021 until 04/22/2021, he underwent a severe form of coronavirus infection, was hospitalized, and received antibiotics for three weeks. After being discharged from the hospital, he never returned to his "normal" life. Constantly experiencing severe weakness, severe sweating, shortness of breath, pain in the knee joints.
After being discharged from the hospital, he continues to receive a maintenance dose of corticosteroid drugs, while trying to cancel them, he developed two febrile attacks with an increase in temperature to 38.6-39.1°C: from 05/15 within 5 days and from 05/28 within 4 days.
After examination in the clinic, a diagnosis of Nephrodysbacteriosis/CBIS was established with latent formation of chronic sluggish pyelonephritis (based on a general urine analysis with proteinuria, leukocyturia, erythrocyturia, cylindruria /, as well as ultrasound of the kidneys). Although there was no history of previous kidney disease. Allocated 3 cultures of hemolytic staphylococcus (2 - urinoculture, 1 - from the nasopharynx). On June 14, 2021, it is planned to start immunization with staphylococcal vaccine.
2) A 50-year-old woman came to the clinic in April 2021. The main clinical complaints were persistent recurrent urticaria for six months and local Quincke edema on the face paraorbital (more often not symmetrically) of unknown etiology. Since November 2020, she had a low-grade fever, intoxication "shadows" under the eyes, increased fatigue, weakness, headache, dizziness, decreased cognitive functions ("head in a fog") appeared, barely performed her professional duties at work, stopped visiting gym ("no strength"). She noted intermittent reactive arthralgias in the area of the foot joints.
A diagnosis of Nephrodysbacteriosis/CBIS was established: Staphylococcus aureus and Enterococcus fecalis were isolated from urine against the background of a normal general urine analysis, although in November 2020 Klebsiella pneumonia was isolated from urine, which was not given importance at that time.
From April 27 to May 17, 2021, the first course of immunization with staphylococcal vaccine of 7 injections was carried out. She noted positive changes in well-being after 3-4 injections. At the control examination on June 7, 2021, there were no complaints, after the start of vaccination, urticaria and Quincke's edema on the face no longer appeared. She is preparing for the second course of immunization with an autovaccine with a different set of strains.
Nephrodysbacteriosis/CBIS are hidden under the mask of many diagnoses and diseases and also are imitating the classically known CFS/ME. However, this is not a complete list of what can cause Nephrodysbacteriosis/CBIS.
Herewith, the list of symptoms of CBIS can be significant, which brings it closer to CFS / ME, or at the initial stages it can be limited to just a few dominant symptoms: prolonged subfebrile condition, febrile attacks, noticeably increased sweating with a sharp unpleasant and "indelible" smell of sweat, alopecia (see Example 7 in Report 4), joint lesions that mimic rheumatoid arthritis and gout (see Example 1 in Report 3 and Examples 9 and 10 in Report 5), isolated elevation of ESR, leukopenia, persistent lymphocytosis and neutropenia of unknown etiology (see example 12 in Report 6).
A separate and fairly large place in Nephrodysbacteriosis/CBIS is occupied by skin lesions, which are generally rarely associated with CFS / ME. We regard such seemingly independent nosological diagnoses as recurrent urticaria, erythema, local Quincke's edema mainly on the face, atopic dermatitis, erysipelas, eczema and many others as bacterial toxicoderma and very successfully treat them as a classic (for us!)
Manifestation of Nephrodysbacteriosis/CBIS. We treat not as an allergy, an autoimmune or genetically determined disease, but as a manifestation of a toxic skin lesion. However, there is a significant "time" factor here. If, say, atopic dermatitis in children can be cured with a probability of up to 100%, eczema and psoriasis with a disease duration of up to 2-3 years are highly likely, then atopic dermatitis in adults who have lived with this diagnosis all their lives and received constant corresponding diagnosis, treatment, psoriasis and eczema with more than 10 years of "experience" is unlikely.
You can only fight for clinical remission, a kind of respite in this continuous war, into which a person was drawn not of his own free will, but because of an incorrect assessment of the essence and cause of his disease. The same applies to patients with a diagnosis of CFS / ME: I don’t know how much it will be possible to help “bedridden” patients and patients who have developed a disability. But even a respite in this war for each individual person can be expensive.
A few words about postcoid syndrome or "LONG Covid", the symptoms of which are very similar to CFS/ME.
Among those who had been ill in the USA, according to preliminary data, such 35%, in the UK reach 80%. In Italy, two months after the first symptoms, 87.4% of patients continued to complain of certain ailments. Almost half speaks of a sharp deterioration in the quality of life. Most often, patients with long-term coronavirus infection suffer from fatigue (more than 77%) and cognitive dysfunction (about 55%). Also, most often they complain of shortness of breath, tingling in the hands and feet, insomnia and causeless anxiety. Some are faced with conjunctivitis, prolonged, albeit low, temperature (subfebrile condition) and even hair loss.
Clinically, this reminds us of Nephrodysbacteriosis/CBIS, which developed / worsened after the use of antibiotics. Namely, patients with clinically manifest coronavirus infection, occurring with lung damage and included in the statistics, usually receive antibiotics. A noticeable "surge" in CFS/ME was noted back in 1957 after the pandemic outbreak of Asian influenza. One example from our clinic cannot give an answer about the causes of the "long covid". But just as the whole surrounding world is reflected in a drop of water, so a whole problem can really be reflected in one clinical example.
Best wishes from the UK!
